Carer is a husband who has so far managed to care for his wife at home with respite care every 8 weeks. They have two children. She was diagnosed in 2000.
Brief outline:Gradual onset mistaken for depression. Diagnosis given jointly to husband and wife. Slow progression. Problem with restlessness and wandering. Very involved with the local Alzheimers disease society. He tries to involve her in decisions where possible. Initially prescribed antidepressants later given trial of Reminyl. Later benifited from sedatives and sleeping tablets.
I mean when you talk to other people about the first insights that you have everybody says the same things that it's a series of unrelated and apparently insignificant things that happen. It's only now that one can look back and make sense of them, so let me give you one or two examples of what I mean.
For example we went on holiday in 1996 to Falmouth and drove along the coast, stopped at the beach and I remember saying to my wife 'Would you lock the car up and I'll go and get a parking ticket and then we'll go off.' We went off and came back an hour later and all the doors of the car had been left open.
At the time we kind of laughed about it, no harm was done. But a year later when my daughter was relating to a doctor at the [town name] School of Medicine where she works and she mentioned this incident as one of a number of inexplicable events, his immediate reaction was 'It's probably Alzheimer's.' And that business of leaving the car doors open was something that became a sort of a thread really that went on for several years. That's one example.
I think the second is a much more profound experience and this must have begun about 1997. Sorry, there were other incidents like failing to take telephone messages down accurately so friends or colleagues would ring me and I didn't get the message or I got a message that was incorrect. But really the really significant thing that happened was, round about 1997 when my wife had returned to work successfully, been at work for about two years but had then decided to give up because of the physical problems that she was having resulting from the accident.
I began to notice that when we'd had a meal in the evening, round about 7 o'clock, we would come into here and it was a kind of ritual really, we always read the newspapers for about an hour after dinner and talked about what was in the news and so on and it was something that we'd done for the past twenty years.
But she wasn't doing that any longer and all she was doing was sitting in this chair staring into space. I would say to her 'Is everything alright?' And she'd say 'Yes I feel fine I'm just thinking.' This happened night after night and looking back now it was a sign of a sort of detachment that has become characteristic of her illness, when she can go off into a dream world for quite long periods unless I'm there to bring her back. So that was that sign.
And coupled with that was a general sense of depression. Eventually I must have shown quite a lot of concern because on one particular occasion I remember her saying 'Why are you always getting annoyed with me?' and I remember saying to her 'It's because I'm so worried about you.' And she was absolutely distraught at that moment and I remember saying to her 'Look, let's go and see the doctor.' And she agreed to that, when it came to it, on the morning of the appointment she wouldn't go and so I went down on my own. At that stage he thought it was depression.
What I observed while we were waiting to be seen was, people going in and out, husbands, wives, family members going in individually, obviously to be, to discuss things with, the professionals. And I imagined quite incorrectly that what was happening was that they were being given information or a diagnosis separately from the, from the patients, but that turned out to be incorrect.
But I suppose the, second, reason was I suppose I thought again incorrectly perhaps that consultants would be reluctant to, give a completely honest diagnosis when you're dealing with an illness which is, which is pretty distressing to contemplate, where there is no apparent, treatment or cure for it. And the long term prognosis is a pretty grim one and I just felt that maybe they wouldn't want to do that quite directly and openly, but that didn't prove to be the case.
And then when we eventually went in it, was, to see the consultant, it was just the fact that without any preliminaries, he simply came straight out with the diagnosis, not wrapping it up in any way at all, and causing us both, quite naturally, considerable distress. I understand now I think why he was doing that, but it was quite a shock at the time.
Yes. Why do you think...?
Oh, I think that, if you're less than honest, if the patient is not made aware of the nature of their illness then it simply cuts you off from a great deal of the, support and advice that you can get. I mean not least, it makes the future dialogue between the consultant and you and the patient, a less than honest, and therefore a less than helpful, dialogue.
And I just think that as far as we're concerned, everything that has flowed from that moment in terms of, medical treatment support for both myself and [my wife], has stemmed from the honesty and the directness of that first diagnosis. So I'm, now absolutely convinced that in almost any case that I can think of you really should be as honest as you can. And then you come to terms with that, and I believe most people will find a way to come to terms with it, and then you can kind of move forward in terms of, leading your life as naturally as you, as you can.
Initially I think you're looking for an explanation of what has happened so I wanted to know what dementia was, exactly how it affected the brain, in quite a lot of detail you know, I wanted to know that kind of physiological and psychological data and I got that and that's not difficult to get hold of. There are several books that gave me that information. I also found it, I was going to say - I haven't thought about this so I'm having to kind of reflect on this - all that material about the role of the carer and how he or she can play the role, what the issues are and so on, at that stage I think passed me by. It took a long time before I began to reflect on that, other than just the day-to-day coping way. I can remember someone coming and saying 'Well you ought to think about power of attorney.' All this sort of went in one ear and out the other really.
It's the last few months that I began to think more and more about information about the role of the carer and how it can be played effectively and so on and so forth. Which I suppose is why I wanted to be involved in this project. So initially it was 'What is dementia and where does it come from?' You know you begin to think 'What are the explanations, what are the factors here, is it genetic, is it to do with the accident, why is it happening to my wife?' That was what I wanted to know initially but you know now that's neither here nor there, it's about how we can live our life most effectively over the next few years that I want information about. I like talking about that sort of thing and that's why I belong to carers' groups and so on 'How can I play my role as well as possible so we can both go on having a pleasurable sort of life together?'
I think the issue was when we decided to add, or the consultant decided to add to the Reminyl and the sleeping tablet and the anti-depressant, decided to add to that a tranquilliser. To try to deal with this issue of agitation and anger in the early evening resulting in her wanting to storm off and so on and so forth, and it was suggested that we added the tranquilliser, Diazepam.
When I read about the side effects of such a drug I mean I was extremely concerned indeed, you know. It looked as if there was a possibility that you could be even more confused than you were, that people kind of you know became almost zombie-like and so on and very, very passive and I really was worried about that and that was why I sought help on that.
There was an actual clear division between our GP who said 'Give it when you sense that something is about to happen, when you sense in the early evening that she's boiling up for a period of agitation and possibly wanting to wander off, try and sense when that moment is and give it her.' and the psychiatric nursing team who had a quite different view. And their view is that the side effects of tranquillisers may not be as powerful with dementia patients as they are with ordinary patients and they may not become addicted in quite the same way and actually what you should be doing is giving them on a regular basis when they're much more effective.
So you're giving them say in the early afternoon when they've had time to get into the system and are much more efficient, rather than giving it as a sort of panic measure and I was quite taken with that. So that's what I try to do, not worrying too much about the side effects.
I have to say I'm still worried about the side effects and I'm actually caught between those two models of how you give a tranquilliser to a dementia patient and I still haven't resolved it. So it's that kind of issue. Another issue would be exactly when do I give her, her evening dose which is now the Reminyl plus the anti-depressant. If I wait till just before she goes to bed that often results in anger. She sometimes throws the tablets across the room; she won't have that so it's choosing a moment during the evening when she's at her most receptive. It's issues like that but particularly the role of the tranquilliser in dementia which I think is quite a difficult thing to get right and I haven't got it right yet.
I mean it, there was no decision to be made in a sense. I mean if you want to be very legalistic about it. It's part of one's marriage vows you know that you, are to be with that person in sickness and in health. We've loved each other for forty years. There have been many times when I've not been well and she's looked after me with, without reservation, without hesitation. I hope I've done the same for her and this was merely a more serious example of that kind of fulfilling one's vows.
I never thought for a moment that I would, not do it, she has looked after me with such devotion and love; it was little enough I could do in return to do the same for her. I, there was no decision to be made, that was it, you know.
And what keeps you going as a carer?
I mean partly that it is, it is partly that sense of still loving you know the person that I, I've known for over forty years but also there is, there is a sense of satisfaction in doing the job as well as you possibly can. There are even things that I, positively enjoy about it if one can actually say that.
I've taken great pleasure and joy in, she now allows me to, look after her hair which I, we, have daily sessions with that, usually with lots of laughter on both sides. She thinks I'm turning into some kind of rather eccentric hairdresser! And, so that, there is a lot of satisfaction in that.
I do get a great satisfaction when I know that she's nicely dressed and nicely turned out and is feeling good about herself. I love, I think I've said this before, I really have enjoyed, cooking and cooking for her and that sort of thing.
After about nine months when I realised that nobody was really going to come trotting to the front door to tell me things and ask how we were, I needed to reach out to find out more at which point we joined the Alzheimer's Society. And that, the Alzheimer's newsletter and various other things, I send for all their literature, so within about twelve months we'd built up quite a bank of information about the disease and about the process of caring and dealing with the various issues, legal, financial and so on.
Well as I say it took me a year to get round to the view that actually you do need to tap into all these sources of support and help and I regret that I didn't do that for nine months to a year. Things changed really radically for us once we did that and I wish I'd done that. But I guess that's how it goes, that it does take time before you begin to understand that you need to look outwards towards other supports.
I suppose we're the kind of people may be, like yourself, you've been used to sorting out your own problems without going to outside agencies and it was a matter of pride that one could do this but that was kind of misguided. I try, if I meet people new to this situation I try to say this to them but I think everyone has to go through it in their own way.
But I do regret we wasted a year really, I don't suppose it made that much difference in the end but I think it would have been useful if we'd got involved in the Alzheimer's Society and other things much earlier. But in general I don't think there are too many regrets in that way.
Everyone says its one of the worst moments you have, when you, take your wife or husband, mother, for the first time for a period of respite. Nobody wants that to happen, you don't want it to happen, certainly the patient doesn't, you want life to be as it was before. And it was simply horrid, the first time that we did it, she said she didn't want to go and I was doing it against her will and so on.
And, I had to try to, persuade her that this, a little period apart for both of us would be good for both of us and after all she did like and know the people that she was going to be with. But it was a difficult moment.
We've now had four periods of respite and each one has got a little bit easier. And the way we're working it at the moment is this. We talk about the respite experience as a regular part of conversation. You know, I might say, perhaps with other members of the family here, 'Oh, do you remember [name] when you were in respite you did…' so and so, or 'you met…' so and so; so its, its there as, as part of the memory of our recent past.
And then, and sometimes [my wife] herself will, will suddenly say 'Oh, when I was at [the residential home] last, we did…' so and so. Or, 'You know the thing about [the residential home] is I, I like the food but I don't enjoy being in the dining room because some of the other people don't eat in a very nice way.' So we're able to open up a little discussion, 'Well some of these people are very much, are quite seriously ill and are quite elderly,' and she says 'Oh yes, I understand that perfectly.'
So we quite often have discussions about it and she has memories of the past experience. And then about three or four days before she's going I usually tell her that this is what's happening: 'Remember next Monday it's the start of your week at [the residential home].' She normally says, 'I don't think I'll go this time.' So we then have to have a discussion where again I say 'You know the reason why you go to [there]?' and she'll often say 'Yes, it's to give you a break.' You know and I'll say to her 'You like, you enjoy being there and you know we always, look forward to meeting each other again and have a really nice time when we come, together.' So it's that kind of.
But she forgets from day to day and then on the day itself I will say 'You remember this is the day we're going to [the residential home]?' Now, this last time there was simply no problem at all, on the day, she was quite happy for me to pack her case, she herself pottered round and got things ready. Made suggestions about the things that she would like to take.
I've tried to, I've tried to keep up the kind of standards which [my wife] would have, would have insisted on when she was in full health. So, for example, I try to make meal times as, as pleasurable as I possibly can. We, I try to ensure that we set the table as nicely as we can we have wine to drink with our meals. I usually have some of her favourite music playing in the background. So we make, we try to make an occasion of most of the meals that we, that we have.
I think that would be, and particularly, our favourite meal is breakfast which we always gave ourselves time to, to enjoy, even when we were both working, even when the children were at home. And that's something that we still experience in quite a formal sort of way. Again with, with music playing in the background and so on. So you know, it, it becomes something which, which gives us both real, real pleasure, that would be an example I think.
Have any been difficulties with your wife taking medication and if so how did you deal with it?
On the whole that's gone quite well. And particularly once we settled down into, a regular pattern, of morning and evening tablets. Occasionally she is reluctant and, what I usually say to her then is, remind her why she's taking them, that these are designed to essentially to make her feel calm and, and, and content and as relaxed as, as possible. And it is important that she takes them and that these tablets have been, recommended by her consultant, who she has a great respect for. And normally she will then, take them although she says they're horrid to take.
So I don't think there have been any particular difficulties at all. Occasionally when she's in a particularly stressed state she's absolutely refused to take them and on one or two occasions she's thrown them across the room, and at both points I've simply let it go for that time and when she's calm we resume the, the normal pattern of, of taking tablets.
What do you think in general about surreptitious medication?
I mean I would be very reluctant to do that, I think you know you have, you have to try to be as honest as you can, and I think you have to keep talking to the patient about why they're, what the drugs are, what they're doing. What they're, when they should be taken, without dwelling on the, you know, too much on the, the nature of the illness.
And I've found that that has been sufficient. I would be I think very unhappy, if I was having to do it surreptitiously. I think particularly, I felt strongly about the sedatives that she's had for a time when she was in a particularly anxious state. And, it was tempting to slip that into a cup of tea or something when she was really angry, but I didn't do that. And interestingly, she quite often said in a fairly terse way 'Oh you're, you're trying to keep me calm are you?' or something like that. So she knew exactly why, what they were for and in a way intuitively understood why at a particular point she was taking them, and I, you know I'm, I'm happy with that. So I'm really against anything being done surreptitiously.
I just think you have to try to be, let me start again. I think our marriage has been based on being truthful and honest and open with each other about everything. We've, I don't think we've had any secrets from each other at any time. And, I just felt I wanted to maintain that kind of quality of relationship between us. So it would have come very hard indeed to, to have been doing something which was quite against the way that we'd operated in the last forty years. It's as simple as that really.
More recently - and this has been the major area of difficulty - she's wanted to wander. Well, she's wanted to go home. That's now something that happens three or four times a week, usually in the evening when she'll announce after a meal in the evening 'Well I'm going home, I've been here long enough, I need to get back to my parents.' So she'll pack a case and sets off. Now the way I deal with that now, it's taken a little while to do this, is that I don't try and fight against it, I certainly don't try to lock the door, although I did initially but that led to a great deal of anger and some violence, she would throw a telephone or throw something across the room and occasionally she's tried to hit me, well she has hit me but not very seriously.
What I do now is to say to her 'Well if you're going I'll take you down in the car to the town.' 'No, no…' she'll say '…you don't need to do that.' 'Go on, I will.' 'Alright then.' So we get in the car and we drive into town and then I say to her 'Well I'll tell you what, I'll walk with you a little way.' 'No you don't need to do that, I'm quite capable of walking on my own; alright well if you want to you can.' So we walk through the town and we walk for about half an hour and then after about half an hour I can tell by the way the conversation's going that she's kind of back in the real world again and I just say 'Shall we go home and have a cup of coffee or a bite to eat?' 'Yes that would be nice.' she says and we come back and we're back in the real world except that quite often ten minutes later she'll say 'Well, I'm off.' and she makes off again.
I think the worst is, we've never had it more than three times in an evening, it does get very tiring when it gets to 10 o'clock and it's pouring with rain and she still insists on going, but we go. Each time having a shorter and shorter walk and then she seems to come back.
Gradually she has withdrawn from almost all domestic responsibilities. She was a very, very efficient household manager but that has virtually gone although occasionally she shows a willingness and indeed an ability to do certain things like ironing although she usually leaves the iron on afterwards, or simply walks away from it in the middle and gets on with something else.
She can't cook but she can help with cooking so what I normally do is suggest that she cut up the vegetables or sets the table or something like that. She doesn't do any cleaning although again from time to time she will polish a table or put a duster round but in a rather disorganised way. Initially when I seemed to be taking over responsibilities in the house she was resistant and said 'You're taking everything away from me.' But now she's quite happy about that, she's perfectly happy for me to take the lead in the house and also in matters like shopping and so on.
The other area in the home which has been difficult but which we're gradually coming to terms with is the fact that she does need help from me with washing and dressing. Now that was an enormous issue about twelve months ago when she simply refused to wash, to shower and would grab any old clothes, dirty clothes out of the wardrobe and dress, not exactly inappropriately but in a rather grubby sort of way. Now that was very distressing for me because she was someone who was absolutely immaculate in her personal hygiene and in her dressing and so on. But we've solved that problem reasonably well. She now accepts that I take the lead in suggesting when she has a shower. We've actually installed a walk-in shower in the bathroom. That has helped enormously. By and large that's not a problem between us.
The problem of choosing appropriate clothes for her is still an emotive issue. Sometimes she's quite willing for me to take the lead there but often, indeed this morning she said 'I'm perfectly capable of dressing myself without your help.' So that's a difficult issue and is a cause of some distress between us. Shopping also it's now entirely my responsibility. So in a sense the sort of day-to-day domestic role, I've gradually taken over that and that doesn't cause too many problems now.
I think you have to be terribly flexible, I think its no good having any kind of set idea of how things are going to go. The life for a carer for someone with dementia is so, uncertain, that I think you don't have to be worried if things don't go according to plan, you have to change your plans, your ideas, you timetable almost from minute to minute and I think that flexibility's quite important.
I think you have to be able to find your pleasures in small everyday things. Many of the, large elements in a relationship, in a marriage maybe have gone. For example for us I think maybe holidays are no longer going to be possible. Who knows maybe we'll find a way of solving that problem but at the moment that looks to be unlikely.
Therefore, you have to sort of look for things that will give you, that will give you pleasure on a, on a day-to-day basis. It may be just a walk in the park, a really nice meal, listening to a favourite piece of music, those kind of things, small everyday things that just give you pleasure, both of you pleasure from, from minute to minute.
And I think trying to find opportunities to laugh and that's not always easy to do but, if you can I think, it just helps to lighten the burden I think.
What I did was to deliberately make contact with one or two friends that we hadn't seen for some time.
And the response in every case was, was very interesting and was actually quite similar. They were all immensely relieved, very pleased indeed that we'd, that I'd made contact. Said, I think all of them that I spoke to said 'We didn't quite know, we wanted to make contact with you, but we didn't quite know how to do it, or whether you would welcome it, or whether [name] was able to meet up with us again. We just didn't know how to play it at all, and we're so pleased that you made the first call. And we'd love to come and see you, or you must come over and see us.'
So we've picked up again, in some cases with people we haven't met for a number of, a number of years, and that's been, has given us both great, great pleasure, and I'm hoping that we can go on doing that. So I think that what I want to say about that is, is that, if you're in any doubt as a carer whether you should pick up a telephone and talk to old friends or not, I would say do it.
I can only think of one case where I think the message I got was perhaps we don't want to know about this you know, OK, and I understand that. But in general it's brought us a good deal of, of pleasure. So things are slightly better than they were a few months ago.
But of course, at the same time you do make new friends, people in the same situation and those have been immensely important to us, and are as, are as dear to us now as some of the friends we've had for the whole of our married life. So that's important as well.
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